Why I’m a cancer advocate (and how you can be too)

Two weeks ago, I went to the doctor’s for my annual ‘girl check up.’ All was going well until my doctor started the breast exam. He paused, made an odd face, then felt the breast again. Then he commented that he didn’t remember that lump being in my right breast.

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This is when the world suddenly screeches to a halt, your heart skips a beat and you have a moment to think, “what the $%@! is he talking about?” If you’re a cancer survivor, you might have a flash of deja vu, regardless of your past cancer type. But then the world begins revolving, your heart resumes beating (maybe a tad bit accelerated) and the rational voice in your head whispers, “Take a chill pill.”

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Good support can make all the difference to someone.

We both knew I had small scar tissue from a biopsy done more than a decade ago in that area, but he was convinced something was different. In the days following, I felt like I stepped outside of my body. I scheduled a mammogram and ultrasound, and marveled at the irony that my 18-year anniversary from bone cancer treatment was less than a week away. I reminded the universe that I would be thoroughly pissed off if anything messed with that milestone (then followed with gratitude that I had been healthy for so long, just to be safe). While the anxiety and nerves tried to push to the surface, my determination to be optimistic and courageous remained steadfast. I thankfully am surrounded by a circle of amazingly supportive people. My family is loyal and positive, my medical team competent and kind. I talked to two cancer survivor friends who assured me that I was not being negative or crazy to feel a curling of anxiety in the pit of my stomach, but we would pray for the best. So I went for tests, then plowed forward through life for the few days it took to get the results.

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And it wasn’t cancer. Tests showed that it was a new cluster of tiny benign cysts wrapped in the scar tissue, thus changing the feel and size. The relief was palpable and I admit I cried a few tears of gratitude. I think once you have heard the words, ‘it’s cancer,’ that becomes the most dreaded phase in your mind.

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I know I am fortunate. I have a kick-ass health care team that works together as a team to ensure every aspect of my health is taken care of, even when they work at competing health systems. I have health insurance that allows me to go to almost any medical facility to ensure I can get whatever tests I may need. I have family and friends who support me and are willing to be beside me whenever I need someone (and they know I won’t ask for help so do it without being asked). And I have a mom who is the best advocate anyone could ask for (seriously, if someone tells you that something can’t be done, call my mom!).

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The unsettling reality is that many Americans do not have the benefits that I, and many others, have. Insurance is a financial luxury that many don’t have (there were still 28.6 million Americans without health insurance in 2015, according to the Centers for Disease Control and Prevention). Access to good healthcare, whether good doctors, facilities, testing or treatment, is often unavailable. And even when you can access these things, you still need to sometimes jump through hoops, make too many phone calls, endure long wait times for tests and then results. Many people don’t have family and friends to help during treatment, travel or recovery.

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My gratitude is part of the reason that I advocate for cancer survivors (I also think it’s good karma to give back and I truly enjoy helping others). I have lobbied on Capitol Hill, presented at conferences, raised funds for nonprofits, held someone’s hand during chemo, sat on the end of a hospital bed while a friend faced tough decisions, talked late into the night with a cancer survivor friend and shared many hugs, smiles, tears and laughs. I share these things not to get a pat on the back but to show that if I can do it, others can too. Yes, you can.

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Here are easy ways you can be an advocate for others:

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If you are a cancer survivor or caregiver, consider being a mentor to those going through similar situations. I have met with many newly diagnosed cancer patients at my local cancer center to provide insight into treatment, tests, side effect prevention and survival tips, and much more. I also a mentor through Imerman Angels, which matches people going through treatment with those who completed similar treatments for the same cancer. They also match up caregivers. These can be one-time meetings or long-time relationships. The options are endless, especially with technology.

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Offer to go to a doctor’s appointment with a friend in need.

Volunteer to be an advocacy volunteer for organizations that support cancer survivors, such as LIVESTRONG, American Cancer Society, Cancer Support Community or another similar type of nonprofit. If you’re uncomfortable meeting with your legislative officials in person, there is much you can do from the comfort of your computer. Many of these organizations will send emails to volunteers when action is needed, such as sending pre-written emails to your elected officials, sharing information on social media, and emailing letters to the editors of local medial outlets.

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Support organizations that provide education, counseling, financial support and more to cancer survivors. There are more than 15 million cancer survivors in the United States, and that’s expected to grow to more than 20 million by 2026 (great news!). Access to follow up care, mental support, financial support, fertility treatment and education is vital to the health and well-being of these people. One of the greatest things that could have happened to me was being given a scholarship to attend a young adult cancer survivors’ conference in Montana shortly after treatment. I felt lost and alone during and after treatment, and meeting 60+ other young adult survivors, attending fantastic education sessions (relating to long-term side effects, fertility, job searching and relationships) and simply laughing with new friends helped me embrace my new ‘normal’ life. It was life-changing for me.

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Offer to be someone’s sidekick. This can be serving as a notetaker during a doctor’s appointment, sitting in the waiting room, sending positive phone calls, cards and text messages, showing up with a bottle of good wine. Just knowing there is someone in your corner can make the world of difference.

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Share resources. There are hundreds of organizations in the U.S. that support cancer survivors, many focused on specific cancers, genders, life issues and more. I recently shared a few of my favorite cancer-related resources with all of you. I’m pretty open about my cancer journey and post-treatment life. I realized early during treatment that sharing my experiences might help others going through similar experiences. Frankly, it’s the only way I know to be….having cancer wasn’t a choice I had, but using that experience to help others is a choice I gladly make.

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If you have other resources to share, please feel to comment.

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